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将肾病患者的日常事务情境化:日常时空情境、医疗服务获取与幸福感。

Contextualising renal patient routines: Everyday space-time contexts, health service access, and wellbeing.

作者信息

McQuoid Julia, Jowsey Tanisha, Talaulikar Girish

机构信息

Center for Tobacco Control Research and Education, Cardiovascular Research Institute, University of California, San Francisco, USA; School for Physical, Environmental, and Mathematical Sciences, University of New South Wales, Canberra, Australia.

Centre for Medical and Health Sciences Education, The University of Auckland, New Zealand.

出版信息

Soc Sci Med. 2017 Jun;183:142-150. doi: 10.1016/j.socscimed.2017.04.043. Epub 2017 Apr 27.

Abstract

Stable routines are key to successful illness self-management for the growing number of people living with chronic illness around the world. Yet, the influence of chronically ill individuals' everyday contexts in supporting routines is poorly understood. This paper takes a space-time geographical approach to explore the everyday space-time contexts and routines of individuals with chronic kidney disease (CKD). We ask: what is the relationship between renal patients' space-time contexts and their ability to establish and maintain stable routines, and, what role does health service access play in this regard? We draw from a qualitative case study of 26 individuals with CKD in Australia. Data comprised self-reported two day participant diaries and semi-structured interviews. Thematic analysis of interview transcripts was guided by an inductive-deductive approach. We examined the embeddedness of routines within the space-time contexts of participants' everyday lives. We found that participants' everyday space-time contexts were highly complex, especially for those receiving dialysis and/or employed, making routines difficult to establish and vulnerable to disruption. Health service access helped shape participants' everyday space-time contexts, meaning that incidences of unpredictability in accessing health services set-off 'ripple effects' within participants' space-time contexts, disrupting routines and making everyday life negotiation more difficult. The ability to absorb ripple effects from unpredictable health services without disrupting routines varied by space-time context. Implications of these findings for the deployment of the concept of routine in health research, the framing of patient success in self-managing illness, and health services design are discussed. In conclusion, efforts to understand and support individuals in establishing and maintaining routines that support health and wellbeing can benefit from approaches that contextualise and de-centre everyday human behaviour. Opportunities to support renal patients in managing illness and experiencing wellbeing outside the clinical setting lie in a space-time re-design of chronic care services.

摘要

对于全球越来越多的慢性病患者而言,稳定的日常安排是疾病自我管理成功的关键。然而,慢性病患者的日常环境对维持日常安排的影响却鲜为人知。本文采用时空地理学方法,探讨慢性肾病(CKD)患者的日常时空环境和日常安排。我们提出以下问题:肾病患者的时空环境与他们建立和维持稳定日常安排的能力之间有何关系?在这方面,获得医疗服务起到了什么作用?我们借鉴了对澳大利亚26名CKD患者的定性案例研究。数据包括参与者自行记录的两天日记和半结构化访谈。访谈记录的主题分析采用归纳-演绎法。我们研究了日常安排在参与者日常生活时空环境中的嵌入情况。我们发现,参与者的日常时空环境高度复杂,尤其是对于那些接受透析和/或有工作的人来说,这使得日常安排难以建立且容易受到干扰。获得医疗服务有助于塑造参与者的日常时空环境,这意味着获取医疗服务时的不可预测事件会在参与者的时空环境中引发“连锁反应”,扰乱日常安排,使日常生活的协调变得更加困难。在不扰乱日常安排的情况下吸收不可预测的医疗服务所产生的连锁反应的能力因时空环境而异。本文讨论了这些研究结果对健康研究中日常安排概念的应用、患者疾病自我管理成功的界定以及医疗服务设计的启示。总之,理解并支持个体建立和维持有助于健康和幸福的日常安排的努力,可以从将日常人类行为情境化和去中心化的方法中受益。在临床环境之外支持肾病患者管理疾病并体验幸福的机会在于对慢性护理服务进行时空重新设计。

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本文引用的文献

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Healthcare routines of university students with Type 1 diabetes.大学生 1 型糖尿病患者的医疗保健常规。
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Guidelines for the management of chronic kidney disease.慢性肾脏病管理指南
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